Living with POTS

I was shown an article this week about a teenager who they believed took his life to POTS. I have been thinking about his for a couple days now and how saddened I am that a child thought death was his only option because he was no longer able to do tasks he enjoyed.

This is the greatest reason we need awareness to the disease. Most people with POTS do lose the ability to do average tasks some days. The article stayed this child was a hockey player and lost his ability to play to the disease. Although I do not play hockey I do know how it feel to lose the ability to do average task. Last year I broke my ribs my because I baked cookies and took a shower right after. To much heat, to much time on my feet, and out I went.

My treatment is very controversial and not support by many doctors. I am on chronic saline, although it is a wonderful treatment that many us advocate for and does give us the ability to do more in our daily life. Doctors frown upon it because it usually means a hospital setting. My wonderful Momma helped advocate for me with the help of my one doctor Superman, and helped push home health which is IV and in hospital treatment at home. I have a PICC line and this has been a life altering treatment. Which has brought me to thought. Did this child have the option? Was this child being properly treated? Did he have doctors that a thorough understanding of the disease process? Was there enough education out there that they knew how to treat him? For the average POTS patient there are quite a few medication that treat and work wonderfully, sometimes its a mix of medication that works as well.

Well the point of this I guess is: If we had awareness to this disease, if we had more doctors that thoroughly understood this disease. Most POTS patients could lead a some what normal life. Now there are different stages of POTS and there things that some of us will never be able to do again (anything with a high g-force for one) however with proper treatment, I was able to go to NC with Momma for the day,  I am able to get back into school, and I am able to once again care for myself. I however was blessed with doctors (2) that actually understand and research the disease. I wish there was away that I could publicize the importance of education and awareness. This family had a fundraiser in his honor, I of course run a sight, Momma is in the best position as instructor she teaches her students, but I feel as though we or I can do more.

This busy bee is off to her busy day!
Love Poppet :-)